Friday, January 01, 2010

Approximately 75-80% of persons with Autistic Disorder also have Intellectual Disabilities or cognitive impairment. Yet ASAN, the "Autistic" Self Advocacy Network Board of Directors has no members who represent that large segment of the Autistic Disorder community. The ASAN site profiles its directors all of whom are, by the descriptions on that site, very intelligent and do not have an intellectual disability. It is not clear if persons with Autistic Disorder are represented at all since the Directors are all described as being "on the spectrum":

"Ari Ne'eman ... is currently studying political science in the Sondheim Public Affairs Scholars Program at the University of Maryland-Baltimore County and expects to graduate in May 2010.

Scott Michael Robertson ... has a bachelor's degree in computer science from Rensselaer Polytechnic Institute and a master's degree in human-computer interaction from Carnegie Mellon University. He is currently a Ph.D. Candidate in information sciences and technology at Penn State University's University Park campus.

Dora Raymaker, MS, Systems Science ... currently works on a number of research projects on topics related to healthcare and well-being (through OHSU, http://ohsu.edu), alternative and augmentative communication

Melanie Yergeau is a Ph.D. candidate in Rhetoric, Composition, and Literacy at The Ohio State University, where she also teaches courses in writing, digital media, and disability studies."

The ASAN purports to be an Autistic Self Advocacy organization yet it excludes from membership on its Board of Directors persons with Autistic Disorder and Intellectual Disability even though 75-80% of persons with Autistic Disorder are also cognitively impaired. This is the same organization that rages and rants against Autism Speaks because it claims that its Board is not representative of the autism spectrum.

None of the specific "autism spectrum" diagnoses of the Directors are disclosed so it is impossible to determine whether some of the Directors are persons with Autistic Disorder diagnoses. In the case of Melanie Yergeau the ASAN site does not indicate whether she has an "autism spectrum" diagnosis at all. In the case of Paula Durbin Westby the site indicates that she learned about being on the autism spectrum but there is no indication that she has an actual autism disorder diagnosis. Meg Evans "was identified as autistic in early childhood". The site bio information does not indicate that she was actually diagnosed as having an autism disorder.

The lack of representation of persons with Autistic Disorder and Intellectual Disability on the ASAN Board is important in light of their claim to be an autistic self advocacy network working on behalf of all persons "on the spectrum". ASAN has organized protests of awareness campaigns that portray the harsher realities of autism disorders and describes autism not as a disability in the medical sense but only in the social sense that a person with an autism disorder is someone who is simply different. It is only society's intolerance that creates the disability.

As the parent of a child with Autistic Disorder with cognitive impairment I can not see this falsehood being perpetrated without speaking out against it. When I am dead or infirm my son will require the assistance of society in order to live and prosper. He can not survive on his own. His reality is shared to a greater or lesser extent by the 75-80% of persons with Autistic Disorder who are also intellectually disabled. The brilliant directors of ASAN who are "on the spectrum" do not know him and do not share his challenges. They have absolutely no right to claim to represent persons with Autistic Disorder and intellectual disability to the extent that they do so in the guise of being "self advocates".

ASAN directors oppose curing autism. They declare that "WE" do not want to be cured. Well and good. If my son had their intellectual AND social skills I would not want a cure for him either. But he does not have their abilities and many persons actually diagnosed with Autistic Disorder do not.

ASAN is wrong to oppose research aimed at curing autism. ASAN is an elitist group of high functioning individuals, some of whom may not even have an autism diagnosis, some of whom are known to have Aspergers diagnoses. They all demonstrate social, behavioral, intellectual and communication abilities not typical of most persons with Autistic Disorder.

ASAN misrepresents itself when it claims to being a "self advocacy" network for persons on the "autism spectrum". It is a claim that should be dropped.

11 comments:

Just Imagine the impact on our children if the world lived our lives for one day & really understood the needs of those on the lower functioning end of the spectrum. Thank you, Well said, and have a great New Year. TannersDad Tim Welsh Autism Advocate

ASAN doesn't even have anyone on their board of directors who actually seems to be disabled. I'm not intellectually disabled but I'm certainly more disabled by my autism than they are, as are the majority of people with ASDs.

They could at least get someone who is actually disabled to be on their board of directors.

Harold -- Speaking of intellectual disabilities, I just put up a post about my own story. You will remember how happy I was that my son and daughter-in-law had been accepted into a new building and a supervised housing program.

They're right... with a lot of work and the right "disability".. there's no need for a cure when you've already been "cured"... Looks at 10yr old..

But when the dx is more severe, when long term disability is a reality... nobody, nobody at all.. should be at the mercy of strangers and those that claim to understand them when they haven't a clue and have never had their disability.... Looks at 8yr old.

Others such as Stephanie and Jonathon... those that have issues that I don't understand, YET, sympathise with, should also have the right to demand better for themselves and a cure if they wish it.

ALSO, that board should have all autism voices on it... otherwise they are no different than AS or any other other autism "camp"... Until they do, they don't practice "ACCEPTANCE", they practice "My way or no way".

You can start with the Canadian Psychological Association "Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006" at:

http://www.cpa.ca/cpasite/userfiles/Documents/advocacy/autism2206.pdf

At page 2 of that document it states with respect to "autism" "the document discussed "autism" and Aspergers separately as you can see in the following quote) that:

"Symptoms and Impairments:

• Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average.

Persons diagnosed withAsperger’s Disorder have average to above average intellectual functioning."

You should also note that the recent CDC autism prevalence report also included figures in relation to cognitive functioning although the figures provided are for the entire ASD spectrum including Aspergers for which BY Definition there are ZERO instances of intellectual disability of cognitive impairment:

Cognitive Functioning

2004

From 37.9% (Arizona) to 63% (Alabama) (overall average: 43.8 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for at least 75% of the children identified).

2006

From 29.3% (Colorado) to 51.2% (South Carolina) (overall average: 41.0 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for atleast 75% of the children identified)."

If you take the 29.2% to 51.2% range for persons with ALL ASD's included who have ID then it is obvious that the inclusion of Aspergers in that estimate obscures the fact that the ID estimates would all from the non-Aspergers ASD's and would be somewhere between 50 -100%. The figure of 75-80% of children with Autistic Disorder also having ID or cognitive impairment would be both a conservative estimate and mid-range from the CDC figures. It is also consistent with the CPA brief first mentioned above.

As you state you are not sure if Meg Evans has an ASD diagnosis. As for the others, if your information is correct all but one have Aspergers and yet claim to speak on behalf of persons with Autistic Disorder. The one with Autistic Disorder is HFA not cognitively impaired or intellectually disabled. (Unlike 75-80% of persons with Autistic Disorder).

The ASAN Board of Directors are NOT representative at all of the Autistic Disorder part of the "autism spectrum", the original pre 1994 autism.

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The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

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We need to even out the funding.

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Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

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We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.